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Diagnosed with Dupuytren's at only 18 years old
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05/19/2014 21:13
dwise7595 
05/19/2014 21:13
dwise7595 
Diagnosed with Dupuytren's at only 18 years old

Hi everyone. I first noticed a bump on my hand back in July of last year. I didn't know what it was and didn't really think much of it. I went to the doctor and they said that it was just a cyst and that it will likely go away on it's own. But, it had now been almost a year since first noticing the nodule.

I do not know what the original initiation of the disease may have been but I assume it may have been cheerleading. I have been a male cheerleader ever since I was a junior in high school. I use my hand much more than the average person and use them in an aggressive way at times. I throw girls into the air and they land on my hands, and often just my single right or left hand. I am now in college cheering for the best coed cheerleading team in the world.

As you could imagine, much of my life revolves around cheerleading and using my hands. At this current point, no contracture has begun. The nodule seems to vary in size and turns white-ish when I fully extend my fingers. If a contracture begins in my hand, my cheerleading career is over and this will be devastating considering it is my main source of income and I'm provided a scholarship. Ever since I thought that I may have Dupuytren's, I have been worrying and somewhat depressed.

I went to the doctor today and he said that I may indeed have the disease but it has not progressed to the contracture stage yet. He seemed to think it wasn't a big deal and that they can take care of it before it ever reaches a serious stage. I'm not convinced. I have a few questions:

Is there a chance this is not even Dupuytren's? The nodule is under my fourth finger and seems to have slight pits surrounding the area.

Likely how long will it be until I notice a contracture?

What should I do at this point? Should I go to a specialist and request radiation therapy, surgery, or a shot?

Will this affect me for the rest of my life? How likely is it that this young age of onset and my other factors will make the disease aggressive and untreatable?

Thank you so much, any help will be appreciated.

Here are links to pictures of my nodule on my right hand:

http://bayimg.com/OaOEIAAFe
http://bayimg.com/oAOeMaaFe
http://bayimg.com/Oaoenaafe
http://bayimg.com/OAOEOAAfe

Edited 05/20/14 00:23

05/20/2014 05:55
spanishbuddha 

Administrator

05/20/2014 05:55
spanishbuddha 

Administrator

Re: Diagnosed with Dupuytren's at only 18 years old

Welcomed dwise

It's difficult to tell from photos if that is a DD nodule, and IANAD anyway. An experienced hand surgeon or physician would be able to differentiate it from a nodule, ganglion, cyst, something else by palpating it, perhaps a scan. Is it attached to the underlying joint, the surface skin, a tendon, or the fascia? Are there other symptoms? Soreness, itching, crawling, stiffness?

I would recommend taping that hand or wearing a glove if allowed, or finding some way to protect it during your cheerleading activities. Also take a regular photo, maybe monthly to keep a record of any changes.

If it is DD it usually progresses slowly, although having symptoms at a young age might indicate a more aggressive form. But first you need a more accurate diagnosis. If it's not bothering you, other than by looking at it, ignore it mostly but monitor it for changes, and protect the hand.

Best wishes

SB

Edited 05/20/14 08:56

05/21/2014 17:31
newman 
05/21/2014 17:31
newman 

Re: Diagnosed with Dupuytren's at only 18 years old

Hi Look the first thing STOP WORRYING. This disease is not life threatening. You may find that the disease remains dormant for years. From the photos it appears that you have calluses on the mcp joint areas (base of fingers). You need to use a hand crème to soften the tissue. The idea is to monitor /take photos and take measurements using a protractor for future reference. Finally any breaking of the cord in the palm is easy if it ever is necessary using NA. I am in my early 70's and I always remember a saying I saw on a table,as a youth ,whilst waiting at the dentist . "I complained because I had no shoes until I met a man who had no feet" You have the world infront of you . Regards from Down Under.

Edited 05/23/14 11:39

07/15/2014 02:29
griffin77 
07/15/2014 02:29
griffin77 
Re: Diagnosed with Dupuytren's at only 18 years old

just red this/ sorry its looks like it could be DD because of the location of the bump mine came up in the same place on my right hand in about 1 or 2 wks time/ it is worse being yr age if it is DD/ I would consider contacting dr ketchum in kanas city MO if caught in time he can inject it with kenalog to stop any progression and shrink it down somewhat I had 3 injections here in Orlando fl and it has stopped any progression and it has softened and shrunk it down if u wait to long it won't be as effective/at least get to a hand doc to see what it is for sure/ do u have a cords starting on yr hands? they would start in the middle of yr palms under the third or 4th fingers// good luck to u

07/15/2014 13:24
Jolene 
07/15/2014 13:24
Jolene 
Re: Diagnosed with Dupuytren's at only 18 years old

Hello Dwise,
I agree with everyone. Get yourself to a good Hand surgeon/specialist. When calling the office ask to make sure the doctor is indeed abreast on early stages of Dup. If so make the appointment and go. Some doctors do not think MRI scan can detect this. I have had MRI on my hand and it did indeed detect Dup. Along with a ganglion located in the wrist. It is important to have accurate diagnoses. I am no expert. I can only speak from my experience. When I first noticed the signs I had pits in the hands and a very small area that appeared to be a callous located on the actual finger. I took pictures and emailed them to Professor Seegenschmidt in Germany. He confirmed by the photos that it appeared I was in the early stages. I then found a good hand surgeon in Atlanta (where I live). The team that reads the MRI’s are highly qualified to determine if there is Dup. At least that’s how it has worked out for me. Being of age 55 I headed straight to RT. Although the Atlanta hand surgeon was not keen on RT as she said this is not a mainstream treatment in the USA but that she would support me if that was the route I choose. I found an oncologist in Florida who follows Prof. Seegenschmidts protocol. My last round was 7 months ago. So far all is good. I do believe it has stop the progress.
Being as how your you are I would suggest you sending your photos to Professor Seegenschmidt who is an expert in this field. Perhaps he would be able to better assist you in a direction for someone of your age.
I hope this helps

07/26/2014 18:41
dwise7595 
07/26/2014 18:41
dwise7595 
Re: Diagnosed with Dupuytren's at only 18 years old

Hi everyone, sorry for not getting back on here for such a long time. Thank you so much for your information and replies. I ended up going to a specialist, Dr. Sobeski, in Champaign, Illinois. His assistant did not know for sure if what I had was dupuytrens or not, so he suggested that I get it removed then they would know for sure. I then went for surgery a few weeks later and Dr. Sobeski gave me the option not to have the surgery if I didn't want to. He said there was no way to say for sure that it was dupuytrens without removing it. I went ahead and had the surgery and it did end up being dupuytrens after the biopsy. The healing has gone pretty well and I have began resuming most activities. But, where the incision is there seems to be swelling beneath the skin. It feels somewhat hard and is tender to the touch. I was hoping this isn't a big deal and isn't the nodule returning already. It hasn't even been a month so I wouldn't think that. But, it does somewhat feel like I'm stretching the would/beneath the wound when I fully open my fingers. It does suck to have this disease at such a young age, but I guess all I can do is stay on top of it and hope for the best! Again, thanks again for all of your great input!

07/28/2014 07:39
Lanod 
07/28/2014 07:39
Lanod 
Re: Diagnosed with Dupuytren's at only 18 years old

Hello, the best advice for this question is to ask your surgeon!
However, there is one question/suggestion. You may have hypertrophic scarring developing under the wound. This condition is prevelant in a good number of people. Have you had any previous cuts/accidents in your arms or legs etc. and found the wound heals to show an angry red scar after about 4 weeks - and then eventually reduces. If this is the case then this is likely the scarring process that you are experiencing. If so - it will resolve itself. Just a suggestion.

07/29/2014 03:15
Coogeematt 
07/29/2014 03:15
Coogeematt 
Re: Diagnosed with Dupuytren's at only 18 years old

From reading on this site I have learnt that dups can recur after surgery. Also I learnt that dups has an unpredictable natural history. Your nodule may have caused you no problem at all.
So remember if a nodule returns your real options are to wait and see how it progresses or have some early stage treatment. The most successfully tested treatment for earl stage dups to date is radiotherapy.

But read everything on this site.

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